Saturday 20 March 2010 20.07 EDT
First published on Saturday 20 March 2010 20.07 EDT

Tens of thousands of patients are missing life-saving treatments because they are not being told about vital research, according to a new report.

The government has said it wants information about clinical trials to be made available to patients to give them the option of becoming involved. But a report in the British Medical Journal warns that the fragmented and bureaucratic system surrounding trials, and Whitehall's reluctance to change it, means that many remain in the dark.

Taking part in medical research can give patients access to treatments that may not yet be available on the NHS. And studies show that patients are keen to be involved not just for their own benefit but to help others and advance scientific knowledge.

Dr Fiona Godlee, the BMJ's first woman editor and co-author of the report, said: "The demand from patients for information has been clear and growing for many years, particularly among the many patients with less common illnesses where we don't have all the answers about their condition.

"However, finding out about ongoing medical trials even for the most informed people can be extremely difficult. It is largely hidden away and very difficult to access. You would assume in the UK, where we have a national health service, we would have the potential to have comprehensive data about clinical trials – it seems extraordinary that we don't. Instead we rely on staff from voluntary organisations and patient groups to pass on this information."

The report, co-authored by Sir Iain Chalmers, a long-standing advocate of openness on the effectiveness of medical treatments, concludes that the problem is caused by fragmented leadership.

There are currently four public bodies in England involved in providing information about medical research – the National Institute for Health Research (NIHR), the National Research Ethics Service, NHS Choices and NHS Evidence – each of which reports to different officials in the Department of Health.

There is also no statutory obligation on researchers to register a trial, the report states. Thousands do register their research on international databases. However, there seems to be confusion about who should register the trial, how to do it, and on which register, the report says. It calls for a single champion to co-ordinate those involved.

Despite its rhetoric, the government has not been willing to to fund a patient register of clinical trials, the BMJ article argues. Setting up such a register would be costly, it says. A website run by Cancer Research UK, which provides information about 180 new clinical trials each year to cancer patients, employs the equivalent of five full-time editors.

The report says that much of the information is already in the public domain. The National Research Ethics Service already requires lay summaries of all studies that have received ethical approval and these could be used on a patient register.

"No one disputes that giving patients information about clinical trials is a good thing – we are all signed up to that," said Godlee. "However, making it happen requires hard graft, money and clear leadership, and currently the will is not there. The frustrating thing is that the information about clinical trials in the UK already exists but it is too often neither publicly available nor patient-friendly."

The BMJ article concludes: "By joining up existing resources the NHS could create a one-stop shop for researchers registering their trials and a one-stop shop for patients, members of the public, and professionals seeking information about ongoing trials. But this will require political will and an end to fragmented leadership. A champion of sufficient seniority should now be appointed and given responsibility to ensure these bodies work more effectively together."

Professor Max Parmar, director of the MRC Clinical Trials Unit, said: "Providing accessible information on clinical trials is important for patients, clinicians and researchers. From a scientific perspective, registering clinical trials puts a clear responsibility on those running the trial to disclose and report the results, whether they are positive or negative."

The drug company GlaxoSmithKline, which spent £1.6bn on research and development in the UK last year, is the country's leading private sector funder of research.

Dr Pim Kon, its medical director, said: "We would look at any proposals to have a UK-wide register with interest, but meanwhile it's important that patients know about the website clinicaltrials.gov, which contains details of the trials that are funded internationally by government, industry and non-governmental organisations."